Being Mama: Amanda Booth

When model Amanda Booth found out she was pregnant, she and her husband were over the moon. And for the first 35 weeks, her pregnancy progressed exactly as it was meant to. But then a routine test showed that Amanda’s baby wasn’t growing as he should be – and the diagnosis that came next would change Amanda and her husband’s lives forever.

Amanda Booth’s son Micah is two-and-a-half, and much like any other toddler, he loves eating (“Food is a big motivator!” says Amanda), saying no and generally refuses to nap. “He’s a typical toddler,” says Amanda. “He loves to party all day, and then some of the night, too.” For Micah, though, life will always be a little different, because he has Down Syndrome.

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If you’ve ever come across Amanda’s Instagram account (@amanda_booth), you’ll know Micah as her smiling, happy son. He’s He has his own Instagram account – and a burgeoning following – called @lifewithmicah. The photos show an inquisitive, adventurous little boy – who is clearly much loved by his parents. “We started the account because Micah just loved being photographed,” says Amanda. “My husband is a photographer and always took photos of Micah, as any parent would. We noticed pretty quickly how much he loved it – like, way more than a normal kid! So we photograph him all the time now, and stage little photo shoots. He loves it.” The account, too, is a way for Amanda and husband Mike Quinones to normalise Down Syndrome, and to show the outside world that Micah’s upbringing – though different in some ways, of course – is much like any other toddler’s.

“The more you know about something, the less scary it is,” says Amanda. “Micah was the first person I knew with Down, and at first, it was scary for me. But through social media, I found a community and learned that Micah’s journey was not unique, and that there was a path forward for us. So I want to give back and show people that Micah can grow and develop and achieve, just like other kids.”

Amanda’s pregnancy with Micah was “great”, she says – an avowed vegetarian, she stuck to a healthy plant-based diet, and swam 1000 yards a day. “I had hardly any morning sickness – I actually felt great,” she says. While she’d had one ultrasound at 20 weeks, which showed her baby was developing well, at a scheduled appointment at 35 weeks, Amanda discovered that Micah’s heartbeat was quite faint. “I was sent for an emergency ultrasound; the doctors thought perhaps the umbilical cord was wrapped around his neck. That wasn’t the case, thankfully, but when we did the ultrasound we discovered that Micah’s measurements were quite small. The doctor we saw recommended we see a specialist. We were devastated, especially because up to that point, everything had gone so smoothly.”

Eventually, Amanda and Mike saw a few different specialists, each of whom gave conflicting information. “One told us he was fine, one said we needed more testing. It was really confusing.” In the end, Amanda was induced at 38 weeks. “It was something of a blow for me: I was very keen to have a home water birth, but that wasn’t to happen. I had a drug-free vaginal birth, which was as close to my birth plan as I could possibly get.”

When Micah was born, he was small, but Amanda says that apart from that, he seemed like any other newborn. “The problem seemed to be that the umbilical cord had suffered a clot, meaning Micah wasn’t being nourished the way he should have been. We assumed that’s why he was so small.”

When a doctor came in and asked to take Amanda’s placenta back to the lab (“He took one look at it and said, ‘Wow, I’ve never seen anything like that before. Can I take it back to the lab?’ It was incredibly insensitive,” she tells me), she worried that something was wrong. Then a pediatrician came to see Micah not two hours after he was born. “The first thing she said, even before she introduced herself, was, ‘Hi, did you do genetic testing?’” says Amanda. “I was like, ‘Who are you? Why are you here?’ I said, ‘No, we didn’t, we don’t believe in it, it wouldn’t have changed our minds either way.’ She was surprised by that and then said, ‘Well, I think your baby has Down Syndrome. You need to do an echocardiogram, because babies born with Down tend to have heart problems. It was just the worst bedside manner I’ve ever seen,” says Amanda. “There I was, two hours after I’d given birth, being told my son might have Down Syndrome, without any preparation or consideration of how that might make us feel. It was horrible.” Micah was given the heart examination and thankfully, was found to have a perfectly healthy heart. Doctors then advised Amanda and Mike to subject Micah to a series of blood tests, which they refused. “At that stage, he wasn’t even five pounds, and they needed seven vials of blood. We declined the test; we just thought, if the issue is that he may have Down Syndrome and that that would be an issue for his heart, and we already know his heart was fine, we thought the best thing for him would be to leave the blood test until he’d gained weight and was strong enough to handle it.”

For the first three months of Micah’s life – and Amanda and Mike’s new lives as parents – everything ran fairly smoothly. “Lots of sleepless nights, but other than that, it was fine,” says Amanda. ““In a way, it was a blessing that we didn’t find out that Micah had Down until he was three months old, because we got a chance to bond with him as we would any other baby.” But when Micah’s pediatrician – not the woman who had seen him in hospital – made a house call to Amanda and Mike, they knew instinctively what to expect. “Immediately, we knew he was going to tell us he had Down Syndrome. But to have [the doctor] come to our home, to make sure we were prepared and feeling comfortable, was so huge for us. It was so different to our experience at the hospital.”

From there, life became quite different. “There was a lot we had to catch up on,” says Amanda. “We started doing therapy every day for Micah and did some tests to check that Micah’s body was functioning properly. It wasn’t. Our days were a rollercoaster of seeing specialists, therapists and so on. Micah was put on a special roster of vitamins.” Amanda, who had intended to go back to work as a model once she’d lost her pregnancy weight, held off on her plans. “It quickly became apparent that Micah would need me far more than I’d thought. We got on with things as best we could, but it was certainly a huge transition for our family.” Amanda’s mother, who lived in New York City at the time, packed up her house immediately and came to live with the family. “Having her here has allowed me to go back to work and have a life again, because I know that when I leave, Micah is with someone who knows exactly what he needs,” says Amanda.

Now that Micah is two, life has returned to a sense of normality for the young family. “In many ways,” says Amanda, “Micah showed us how to parent him. We didn’t know what parenthood was going to be like, whether Micah had Down Syndrome or not, and I think all babies teach you how to get on with things. One of the best pieces of advice I’ve ever received was to let kids show you who they are – and Micah certainly shows us who he is.” While Amanda admits that she’s the “sappy, sensitive one”, she says she’s grateful that her husband pushes Micah to grow and learn. “He won’t let Micah not learn basic things like walking, he really pushes Micah to develop, which he needs. He pushes all of us.”

As for Amanda’s hopes for Micah’s future, she’s a little reticent to say. “He’s so little – it’s hard for me to even imagine him going to school right now! But I do hope that Micah has a family, goes to college, all those things, but it’s hard to say at the moment. I hope that we continue to learn about Down so that we can help Micah and other kids like him as best we can. Mainly I just want him to be happy… and never move too far away from me. In my backyard would be ideal.”